Herceptin - Quick Side Effects Poll
Comments
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Thanks, everyone! Amazing feeling of exhilaration after going this long haul. Can't wait for you all to get there, too! You can do it! Just think positive thoughts and know that all of the women on this website are pulling for you. Oh, men, too. Sorry Frank.
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congrats Bon!!! I can't wait to join you, but not for 6 more months! I think I'm getting 17, not 18, but not exactly sure. But I'm more than halfway there.
Cindy - hope the spine pain is better and you don't need a scan.
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YaY Bon!!!! Whoo Hooo!!!
When do you get your port out?
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Hi All,
I'm coming to the end of my year of Herceptin treatments. I've had very few if any side-effects. I'm wondering if there's any evidence that one should stay on Herceptin longer than a year, if possible, to prevent a recurrence of breast cancer. What have you heard?
Thanks very much,
KK
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Yay Bon!
I have 2 more to go. I can't wait for it to be done. I'm ready to be in recovery/ survivor mode rather than still in treatment. I really want to stop being so tired all the time!
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Thanks for the congratulations on being finished with Herceptin. I will let you know if/when my nails start to improve and the extreme fatigue subsides.
Calling the BS office on Monday to see about getting the port out. He will be reluctant but it's always been uncomfortable and now it isn't working properly so hoping I can convince him to yank it in July.
Looking forward to a time when we are ALL done with tx, free of se, and can move on!
Hugs. Bon0 -
michcon - I thought I was on the same schedule as you but my onc office had a computer glitch and I had been scheduled for 17 total herceptins and they want me to have 18 so now I have 3 more, get done at the end of Aug. Do you have 17 or 18 total? Hope you are doing well!!0
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Hi,
I was on 4 cylces of TCH and did fine..now am on Herceptin only and having an awful time. My oncologists don't seem to now why I'm having such problems, as they tell me that most people sail through Herceptin only. I'm exhausted, achey, and nauseous. Has anyone out there had anything similar.
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KTF63...Lots of us have had the same side effects as you are experiencing and then others did just 'sail' through. Extreme fatigue, aches and pains and nausea were just part of life for me on Herceptin. Along with wrecked fingernails, a runny and often bloody nose, and leg cramps.
But...I just finished #18 of Herceptin (4 with chemo, 14 alone) last Wednesday over 1 full year and it actually got better the last month. But maybe that's because I could see the end in sight!
Since you are early into the treatments perhaps it's some of the lagging effects of the chemo catching up with you and then the Herceptin just adds to the ill feelings,
The docs say Herceptin is THE miracle drug. If it indeed is that, well, it will have been worth it.
Best of luck.
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Thank you so much for the information and encouragement. It makes me feel like I'm not crazy. I read somewhere that the half-life of Herceptin is approximately 28 days, and if one is getting treatment every 21 days, I wonder if instead of clearing your system, that it tends to build up, and that you're "chasing your tail" so to speak. It seems that by the time I'm ready for another treatment, I've begun to feel a little better.
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Omaz - Bummer! I just saw the doc and was afraid he was going to say I was on the schedule for 18, he confirmed 17. Gave me mathematical calculations on the dose, which went over my head. When he was done, I said, "so, that means 17 right?" lol
ktf63 - I think it is a build up. I'm tired all the time, have stomach issues, and ache almost as bad as during chemo. The doctors will tell you it's not the Herceptin, but we all know here that is is! Not to mention the left overs from chemo like Bon said.
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michcon - I can't find anywhere that it says how much we should have. It just says a year! argh.
Hope you are feeling pretty good! did you schedule your port out?
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Hi all
I had my dose #9 on Wednesday 22nd June. My Onc was away so saw one of his deputies. I asked him how many doses I would be having and he said that the maximum length of time is 18 months as long as the Herceptin is having an effect. however i'm sure I have seen on here others say they were told max. of a year (17 or 18 doses) and others a max. of 2 years. There doesn't appear to be consistency.
I got the results of my last ECG and all was OK also got the results of my last CT Scan and was told that the tumours had stabilised in size. however when I read the report and compared it to the last CT Scan to my mind the tumours have actually decreased slightly. Either way it was good news.
Bon for your sake I'm glad you are finished with the Her. as you seem to have been having bad SEs. So far so good for me just the brittle nails , sometimes runny nose and my hair is a bit on the thin side.
As a matter of interest do any of you know how much your Herceptin costs?
take care all.
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Herceptin costs a lot. Several thousand per infusion depending.
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ktf63 - I have had nauseousness on and off, as well as some periods of feeling sort of faint, sort of nauseious, I haven't been able to accurately describe it yet. I also have joint aches, mainly in my knees.
Lago - can you tell me how much Vit D you are talking again? I tried searching, but can't find it. My onc said I was low and wants me to take 2,000 IU. Right now, I've started taking:
- 1,000 iu of D3 supplement
- 400 iu of D3 as part of Calcium supplement
- 400 iu D? as part of multivitamin
So that totals 1,800 iu. As I just started this week, I will see if that is enough and talk to her next time I go.
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Well, I went for #17 yesterday - and I was informed by my onc that I am now officially DONE. He is not giving me #17 and #18 because my EF is a little lower than they like to see. He doesn't seem to think this is an issue, so I was told everything looks fine, and to see him in a year.
Several times since this all started back in Nov./09, my Herceptin tx were cancelled due to a low EF. I had echocardiograms before almost every H appointment. The onc wouldn't let me have tx if my EF was even a little bit low. I certainly can't complain about the care I have received from my hospital here in Brampton, On.
Also, the support from all the girls (and guys) on the BCO site has been fabulous, to say the least.
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marmalade - CONGRATS!!!0
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Congrats on being done Marmalade!
Has anyone asked their onc or nurses why some get their infusion in 30 min. and some (like me) get it over 90 min? (every 3 weeks--mine was 30 min. when it was weekly) I forgot to ask yesterday.
I had my infusion yesterday. I felt a lot like I had gotten chemo--very tired, tummy a little yucky. I haven't felt that bad from H since my first infusion of it. I even craved a DQ like when I was on chemo--and of course my dh drove me up to get one!
Tired today, but thankfully I have NOTHING on my calendar--so my youngest (19) dd and I are going to lay low and watch some movies! Too hot out to go out anyway.2 more to go!
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TMarina - I do worse with fast infusions. I actually have them do it over 2 hours (onc suggestion) and then I don't notice it very much. I don't know what the rush is, I really have to press the nurses to do it slow even with the Drs order.0
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My Herceptin was over one hour.
That was the standard protocol at the place I got treatment.
Marm - congrats on being done!
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Hi Ladies, My legs and feet hurt so much when I wake in the am and walk. I think my bone pain is from herceptin and I have 2 left. The pain is gradually getting worse and it is mostly in my legs and feet. Last Fri. was my reg. onc. appointment and she totally thinks it isn't from herc. or cancer but she wants to do a pet scan 2 months after I finish herc. she says none of her 300 plus bc patients complain of bone pain while on herc., This is the 2nd check up I have complained about my bones hurting 1st time she didn't even address it. She acts like I'm misinterpreting my pain. I have a very high pain tolerance, just had DIEP six wks ago and had no pain from that, didn't even take the pain meds except for 2 days in hosp. Any one else experience this? Thx and good luck to each of you.
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IowaSue: I, too,have had bad foot pain in the last several months. I mentioned it to my onc at my last appointment - he seems to think it isn't from the Herceptin, but the Arimidex I've been taking for just over a year. Now that I am finished H, I guess I'll find out as time goes by which one was making it hard for me to get down the stairs in the morning!
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I don't take the arimidex.
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My treatment is over 1 hour. By mistake it once given to me in 1/2 hr and I felt worse in those three weeks.
IowaSue - I have joint pain. I did mention to my MO last time and she said, well you are only on H, so its probably due to H. I am not taking anything for it though as it is not that bad.
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Hi Sue - do you get 17 total H or 18? I thought I had 2 more for 17 total but found out last week I have 3 more for 18 total.0
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Hi all! Just saw this on The Today Show on NBC and thought I'd share with all those suffering the hotflashes of chemopause...
Here is the link to something called Hot Girl Pearls. They go in the freezer or fridge and you wear them when your surging...
http://www.hotgirlspearls.com/
Hope you can find them. I had trouble with the link at first but they showed up on Facebook and I backtracked.
Hope everyone has a great weekend. Bon
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One more H to go now. The SE's from number 17 were the usual tiredness but I found that if I didn't give in and went off ot the gym I felt better. I've had enough now though. Can't believe it's been 12 months. Our cruise is in August and I am really looking forward to it.
Frank I am so pleased you enjoyed your holiday and the wine and the goodies. I've bought a bike yesterday and just got back from a getle cycle and sat down and had a hazelnut magnum. I felt I had earned it.
I went to a works do last week and saw some people I had not seen since all this began. They said I look better than I did before !! I do feel fitter as a result of the gym and much more relaxed about everything. We have some family problems at the moment which have actually been going on for 15 years on an intermittent basis and before I used to really get anxious and worry. I am so different now as nothing can scare me as much as this cancer did. I've always been the one in the family to sort things out or at least try to. Now I have taken a back seat and am supportive but not leading from the front and I refuse to get too involved. Life is too short. It is so strange when people cannot see how they are wasting their lives over petty squabbles but I suppose I was the same before this. It is a shame that it takes something as horrible as cancer to wake us up. I actually do stop and smell the roses in the garden now. I am much more relaxed with people and always stop for a chat and actually enjoy being the new me.
I've gone on a bit here and I haven't even opened the fizzy wine yet, better get to it. Have a great weekend everyone and enjoy the sun.
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I had sore joints, muscles, etc while on Herceptin only.
They were the worst a few days after each treatment, and gradually got better as the days went on. By the time of the next treatment they were almost gone, and then bam, got them again.
It took about 2 to 3 months after my last Herceptin before they finally went away.
I am not on anything else, but am in menopause (early) due to ooph at age 43. That along with the Herceptin, could have been compounding the achy feeling.
Herpection does cause side effects, it is listed on the webpage by the manufacture. Granted not everyone gets them, but dr's still need to make us aware so that we are not worried non the less.
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Hi stlcardsfan - Good to 'see' you! You were so kind and helpful to me when this all started. It's been a whole year (whew!). Thanks to you again for helping me.0
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Hi Omaz!
I have been around. Gearing up for the Las Vegas Trip - in September/October.
I do pop on from time to time to see how everyone is doing. I asked my DH to take a picture of my hair, I am going to try at post it.
Glad I could be of some help, and hope you are doing great as well!
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